Tom Kindlon<p>An Irish woman with ME (who is a published author) writes about how minimal involvement in a family funeral<br>took a lot out of her.</p><p>Upon observing the effects, one person observed: "Your wife has one shit of an illness.”</p><p><a href="https://solongasicanbreathe.wordpress.com/2025/03/17/not-all-things-can-be-planned/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">solongasicanbreathe.wordpress.</span><span class="invisible">com/2025/03/17/not-all-things-can-be-planned/</span></a></p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a></p>
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#chronicfatiguesyndrome
30 posts · 10 participants · 2 posts today
Tom Kindlon<p>New information relating to the Independent Advisory Group appointed by Cochrane in 2020 regarding the review of exercise therapy for ME/CFS</p><p><a href="https://hbprojecttalk.wordpress.com/2025/03/13/independent-advisory-group-comment-on-the-cochrane-exercise-review/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">hbprojecttalk.wordpress.com/20</span><span class="invisible">25/03/13/independent-advisory-group-comment-on-the-cochrane-exercise-review/</span></a></p><p>From the latest Science for ME weekly update</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <span class="h-card" translate="no"><a href="https://mastodon.online/@hildabast" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>hildabast</span></a></span></p>
Irish ME/CFS Association<p>Thanks to all our supporters & to trustee Margaret Nolan & her husband Jimmy for their heroic voluntary work on this project.</p><p>Their daughter who they care for has spent over 30 years bedbound with severe ME.</p><p>If you prefer, you can direct message us details.</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://mastodon.ie/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://mastodon.ie/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://mastodon.ie/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://mastodon.ie/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://mastodon.ie/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a></p>
Tom Kindlon<p>New from Austria:</p><p>Assessing Fatigue in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients before and after Treatment with Bright Light Therapy: a prospective randomized controlled crossover study</p><p><a href="https://www.sciencedirect.com/science/article/pii/S1389945725001200" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">sciencedirect.com/science/arti</span><span class="invisible">cle/pii/S1389945725001200</span></a></p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> </p><p>1/</p>
Tom Kindlon<p>Opportunities and Challenges in Using Electronic Health Record Systems to Study Postacute Sequelae of SARS-CoV-2 Infection: Insights From the NIH RECOVER Initiative </p><p><a href="https://www.jmir.org/2025/1/e59217/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="">jmir.org/2025/1/e59217/</span><span class="invisible"></span></a></p><p>From the latest Science for ME weekly update</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>longcovid</span></a></span><br><a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/PASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PASC</span></a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwLC</span></a> <a href="https://disabled.social/tags/postcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>postcovid</span></a> <a href="https://disabled.social/tags/postcovid19" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>postcovid19</span></a> <a href="https://disabled.social/tags/LC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LC</span></a> <a href="https://disabled.social/tags/Covidlonghaulers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Covidlonghaulers</span></a> <a href="https://disabled.social/tags/PostCovidSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PostCovidSyndrome</span></a> <a href="https://disabled.social/tags/longhaulers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longhaulers</span></a> <a href="https://disabled.social/tags/COVIDBrain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>COVIDBrain</span></a> <a href="https://disabled.social/tags/NeuroPASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NeuroPASC</span></a><br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <a href="https://disabled.social/tags/POTS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>POTS</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/pots" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>pots</span></a></span></p>
Tom Kindlon<p>Dysregulation of lipid metabolism, energy production, and oxidative stress in myalgic encephalomyelitis/chronic fatigue syndrome, Gulf War Syndrome and fibromyalgia</p><p><a href="https://www.frontiersin.org/journals/neuroscience/articles/10.3389/fnins.2025.1498981/full" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">frontiersin.org/journals/neuro</span><span class="invisible">science/articles/10.3389/fnins.2025.1498981/full</span></a></p><p>From the latest Science for ME weekly update</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/fibromyalgia" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>fibromyalgia</span></a></span><br><a href="https://disabled.social/tags/Fibromyalgia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Fibromyalgia</span></a> <a href="https://disabled.social/tags/Fibro" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Fibro</span></a> <a href="https://disabled.social/tags/FMS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>FMS</span></a> <a href="https://disabled.social/tags/FM" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>FM</span></a> <a href="https://disabled.social/tags/GulfWarSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>GulfWarSyndrome</span></a> <a href="https://disabled.social/tags/GulfWarIllness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>GulfWarIllness</span></a> <a href="https://disabled.social/tags/GWI" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>GWI</span></a></p>
Tom Kindlon<p>Recording of CureME (UK ME/CFS biobank) team webinar </p><p><a href="https://cureme.lshtm.ac.uk/index.php/2025/03/10/first-cure-me-webinar/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">cureme.lshtm.ac.uk/index.php/2</span><span class="invisible">025/03/10/first-cure-me-webinar/</span></a></p><p>From the latest Science for ME weekly update</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a></p>
Tom Kindlon<p>More on the scrapped update to the Cochrane review of exercise therapy for ME/CFS</p><p><a href="https://www.s4me.info/threads/2025-the-2019-24-cochrane-larun-review-exercise-therapy-for-cfs-including-iag-campaign-petition-comments-and-articles.42305/page-37#post-593402" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">s4me.info/threads/2025-the-201</span><span class="invisible">9-24-cochrane-larun-review-exercise-therapy-for-cfs-including-iag-campaign-petition-comments-and-articles.42305/page-37#post-593402</span></a></p><p><a href="https://www.s4me.info/threads/2025-the-2019-24-cochrane-larun-review-exercise-therapy-for-cfs-including-iag-campaign-petition-comments-and-articles.42305/page-36#post-593377" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">s4me.info/threads/2025-the-201</span><span class="invisible">9-24-cochrane-larun-review-exercise-therapy-for-cfs-including-iag-campaign-petition-comments-and-articles.42305/page-36#post-593377</span></a></p><p><a href="https://drive.google.com/file/d/1bJzQ7C6Gr2sCFQ37vZ0fSiObkSmqc22T/view" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">drive.google.com/file/d/1bJzQ7</span><span class="invisible">C6Gr2sCFQ37vZ0fSiObkSmqc22T/view</span></a></p><p><a href="https://pacific.qualtrics.com/jfe/form/SV_0wRPgjuYlVVZa6i" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">pacific.qualtrics.com/jfe/form</span><span class="invisible">/SV_0wRPgjuYlVVZa6i</span></a></p><p><a href="https://www.s4me.info/threads/survey-on-the-draft-protocol-for-the-cancelled-update-of-the-2019-cochrane-me-cfs-exercise-review.43135/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">s4me.info/threads/survey-on-th</span><span class="invisible">e-draft-protocol-for-the-cancelled-update-of-the-2019-cochrane-me-cfs-exercise-review.43135/</span></a></p><p>From the latest Science for ME weekly update</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a></p>
Irish ME/CFS Association<p>Informal ME/CFS social meet-up in Dublin hosted by Tom Kindlon <span class="h-card" translate="no"><a href="https://disabled.social/@tomkindlon" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>tomkindlon</span></a></span> on Wednesday, March 26</p><p>Hopefully we’ll see some of you there.<br><a href="https://irishmecfs.org/blog/wednesday-march-26-dublin-informal-mecfs-social-meet-up-hosted-by-tom-kindlon-irish-mecfs-association" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">irishmecfs.org/blog/wednesday-</span><span class="invisible">march-26-dublin-informal-mecfs-social-meet-up-hosted-by-tom-kindlon-irish-mecfs-association</span></a></p><p><a href="https://mastodon.ie/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://mastodon.ie/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <a href="https://mastodon.ie/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://mastodon.ie/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://mastodon.ie/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a></p>
Tom Kindlon<p>New Zealand:</p><p>A list has now been released for Emeritus Professor Warren Tate's Research Projects for 2025 on Myalgic Encephalomyelitis/Chronic Fatigue syndrome/Long COVID</p><p>Donations welcomed<br><a href="https://alumni.otago.ac.nz/donate/myalgic-encephalomyelitis" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">alumni.otago.ac.nz/donate/myal</span><span class="invisible">gic-encephalomyelitis</span></a></p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>longcovid</span></a></span><br><a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/PASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PASC</span></a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwLC</span></a> <a href="https://disabled.social/tags/postcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>postcovid</span></a> <a href="https://disabled.social/tags/postcovid19" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>postcovid19</span></a> <a href="https://disabled.social/tags/LC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LC</span></a> <a href="https://disabled.social/tags/Covidlonghaulers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Covidlonghaulers</span></a> <a href="https://disabled.social/tags/PostCovidSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PostCovidSyndrome</span></a> <a href="https://disabled.social/tags/longhaulers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longhaulers</span></a> <br> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a></p>
Tom Kindlon<p>New from China:</p><p>Multiple voxel pattern analysis shows associations between chronic fatigue syndrome and cortical atrophy</p><p>Free fulltext:<br><a href="https://www.frontiersin.org/journals/neuroscience/articles/10.3389/fnins.2025.1535088/full" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">frontiersin.org/journals/neuro</span><span class="invisible">science/articles/10.3389/fnins.2025.1535088/full</span></a></p><p>Fukuda criteria used</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a></p>
Tom Kindlon<p>UK APPG: Minutes of the UK All Party Parliamentary Group for ME/CFS meeting on 5th March</p><p><a href="https://appgme.co.uk/wp-content/uploads/2025/03/2025-03-05-APPG-on-ME-Minutes.pdf" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">appgme.co.uk/wp-content/upload</span><span class="invisible">s/2025/03/2025-03-05-APPG-on-ME-Minutes.pdf</span></a></p><p>From the latest Science for ME weekly update</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a></p>
Tom Kindlon<p>Summary of the <a href="https://disabled.social/tags/UniteToFight2024" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>UniteToFight2024</span></a> conference [first international conference on Long Covid and ME/CFS] by @katha1970 </p><p><a href="https://padlet.com/katha1970_/personal-collection-of-information-for-patients-with-complex-p20bhx4pb54x1may/wish/2998552241" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">padlet.com/katha1970_/personal</span><span class="invisible">-collection-of-information-for-patients-with-complex-p20bhx4pb54x1may/wish/2998552241</span></a></p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>longcovid</span></a></span><br><a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/PASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PASC</span></a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwLC</span></a> <a href="https://disabled.social/tags/postcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>postcovid</span></a> <a href="https://disabled.social/tags/postcovid19" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>postcovid19</span></a> <a href="https://disabled.social/tags/LC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LC</span></a> <a href="https://disabled.social/tags/Covidlonghaulers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Covidlonghaulers</span></a> <a href="https://disabled.social/tags/PostCovidSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PostCovidSyndrome</span></a> <a href="https://disabled.social/tags/longhaulers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longhaulers</span></a> <a href="https://disabled.social/tags/COVIDBrain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>COVIDBrain</span></a> <a href="https://disabled.social/tags/NeuroPASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NeuroPASC</span></a></p>
Tom Kindlon<p>The cancelled protocol for a new Cochrane review of exercise therapy for ME/CFS</p><p><a href="https://www.s4me.info/threads/2025-the-2019-24-cochrane-larun-review-exercise-therapy-for-cfs-including-iag-campaign-petition-comments-and-articles.42305/page-36#post-593370" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">s4me.info/threads/2025-the-201</span><span class="invisible">9-24-cochrane-larun-review-exercise-therapy-for-cfs-including-iag-campaign-petition-comments-and-articles.42305/page-36#post-593370</span></a></p><p>From the latest Science for ME weekly update</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a></p>
Tom Kindlon<p>2/<br>Longer version of that extract:</p><p>"ME/CFS and PCC have similar, profound impacts on HRQoL [health-related quality of life] that warrant access to multidisciplinary disability and social support services."</p><p><a href="https://disabled.social/tags/PASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PASC</span></a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a><br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>longcovid</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/covid19" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>covid19</span></a></span> <span class="h-card" translate="no"><a href="https://chirp.social/@novid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>novid@chirp.social</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/novid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>novid@a.gup.pe</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/auscovid19" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>auscovid19</span></a></span> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a></p>
Tom Kindlon<p>"The 1% Solution" By Bruce Campbell<br><a href="https://cfsselfhelp.org/library/the-1-solution" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">cfsselfhelp.org/library/the-1-</span><span class="invisible">solution</span></a></p><p>Comment: "Getting better" can mean recovering or simply improving. I personally think full recovery from management strategies is unlikely for a lot of people with ME/CFS</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a></p>
Tom Kindlon<p>New from the CDC:</p><p>Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Diagnostic and Communication Case Study for Health Care Providers in Training</p><p>Free:<br><a href="https://www.mededportal.org/doi/10.15766/mep_2374-8265.11507" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">mededportal.org/doi/10.15766/m</span><span class="invisible">ep_2374-8265.11507</span></a></p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a></p>
Tom Kindlon<p>Cartoon from 2004 I found when doing a clear out:</p><p>"Sodham Hall ME/CFS clinic. CBT & GET our speciality!"</p><p>It was drawn by Trish Campbell and I was given permission to use it at the time.</p><p><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p>
Tom Kindlon<p>2/<br>From "Shame, Psychology and ME" by Richard and Katharine Cheston</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a></p>
Tom Kindlon<p>🧵<br>Thread where I'm going to post some slides from this sympathetic February presentation "Shame, Psychology and ME"</p><p><a href="https://uwe-repository.worktribe.com/output/13780159" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">uwe-repository.worktribe.com/o</span><span class="invisible">utput/13780159</span></a></p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> </p><p>1/</p>
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